At the moment I'm not even sure if I should be posting on these message boards. I have been investigated at least twice in the past for lupus because of a malar rash and non-specific systemic stuff (muscle or joint pains, gastro problems, etc). I also have a personal and family history of autoimmune disorders (mum with RA, several family with coeliac, etc). Because ANA and lupus anticoagulant were negative, I was told it wasn't lupus, although I have never seen a lupus specialist. I am positive for antiphospholipid antibodies, though I'm not sure how positive. In the last two years I have had far more neurological problems (muscle spasm, nerve pains, electric shock sensations, etc) and have been investigated by neuros as well (negative MRI, Lumbar puncture, etc), and am waiting on yet another neuro referral.
However, I feel that lupus is now showing itself as a possibility again with a number of symptoms that seem more in common with lupus than MS or other neurological disorder. I have a blotchy patterning on my legs that looks like livedo reticularis, the malar rash is still there (comes and goes a bit but never completely disappears) and the whites of my eyes look awful - kind of like episcleritis though I've not had a doctor say that. I'm also having far more mouth ulcers again, having largely stopped getting those when I went on the gluten free diet for coeliac disease.
The biggest problem at the moment is breathing difficulties. I have terrible chest muscle pains that aren't really being held at bay by the baclofen I take for leg muscle spasm. I was also getting very wheezy on breathing out, and ending up having coughing fits. I'm now getting progressively more congested and still having coughing fits frequently during the day, especially when chest muscles are sorest already. I have pain at the bottom of my right lung when breathing in, and pain at the top and into my shoulder when breathing out. This has been going on and getting worse for 4-5 weeks. At first I got a ventolin inhaler, then a few days ago I have also been given a steroid inhaler and antibiotics. I've now had three days of antibiotics and they haven't done a thing. I'm only coughing up tiny bits in the morning, and it doesn't look infected. I also don't seem to have a temperature, though I'm having awful night sweats (which could be due to menopause). The really odd thing about all this is that it eases most when I lie down flat, and especially lying on my left side, which I wouldn't expect at all with a chest infection or asthma. The only thing that really does seem to relieve problems is actually diazepam. I have that for if muscle spasm really gets to be a problem, but I definitely don't want to be taking it every day or long term.
Does this sound anything like a lupus related lung problem?
However, I feel that lupus is now showing itself as a possibility again with a number of symptoms that seem more in common with lupus than MS or other neurological disorder. I have a blotchy patterning on my legs that looks like livedo reticularis, the malar rash is still there (comes and goes a bit but never completely disappears) and the whites of my eyes look awful - kind of like episcleritis though I've not had a doctor say that. I'm also having far more mouth ulcers again, having largely stopped getting those when I went on the gluten free diet for coeliac disease.
The biggest problem at the moment is breathing difficulties. I have terrible chest muscle pains that aren't really being held at bay by the baclofen I take for leg muscle spasm. I was also getting very wheezy on breathing out, and ending up having coughing fits. I'm now getting progressively more congested and still having coughing fits frequently during the day, especially when chest muscles are sorest already. I have pain at the bottom of my right lung when breathing in, and pain at the top and into my shoulder when breathing out. This has been going on and getting worse for 4-5 weeks. At first I got a ventolin inhaler, then a few days ago I have also been given a steroid inhaler and antibiotics. I've now had three days of antibiotics and they haven't done a thing. I'm only coughing up tiny bits in the morning, and it doesn't look infected. I also don't seem to have a temperature, though I'm having awful night sweats (which could be due to menopause). The really odd thing about all this is that it eases most when I lie down flat, and especially lying on my left side, which I wouldn't expect at all with a chest infection or asthma. The only thing that really does seem to relieve problems is actually diazepam. I have that for if muscle spasm really gets to be a problem, but I definitely don't want to be taking it every day or long term.
Does this sound anything like a lupus related lung problem?
but they do need further investigation if they don't clear up, probably with a Pulmonologist. I know you are recovering from a recent bout of flu and for sure that's not helping :hugbetter:
